Tuesday, May 26, 2015

As I write this Zoey is asleep on the couch behind me. You know that feeling when your phone rings and it's the school? That, but I was home. Just a tummy ache, so I drove the 5 minutes to school thankful that I am not yet back at work, 40 minutes across the bridge.Over the weekend I got the news that a woman who had HSCT in Tel Aviv passed away. She was more disabled than I, maybe older, I'm not sure. That's not very factual but it's as close as we are going to get. During chemo she went into anaphylactic shock which caused multi organ failure. She was in the hospital for a few weeks in Jerusalem, then flown back home to Florida where she was in the hospital for a month or so. Ultimately she ended up with heart, renal and respiratory failure. On Friday her husband informed the HSCT forum that she had died. Factual should answer the question why, but it doesn't even try.But those are the facts that we know. This is the feeling that I have. In some ways I feel like the treatment was too easy for me. Did it work if I was able to ride roller coasters this weekend at my kids' school carnival? The Typhoon, The Tornado, all but bathing myself in Purell but still, I was there. I mean, there is a numb spot on my pointer finger as I type. Just a spot. At the tip. Of my finger. It may always be there. How long has it been there? Did it work? Why am I so lucky to have made it to the other side relatively unscathed while someone else died? Why am I so unlucky to have MS in the first place? Why am I so lucky that my child is asleep on the couch with what may or may not be a made up tummy ache after a weekend eating cotton candy?Why is a real fucker, a question that never gets answered as it spits out a flippant why not? I don't know. I knew it was a risky treatment, but knowing is nothing really when we're talking about a heart that stops working.

This morning the cats knocked over my human anatomy model, so while Zoey sleeps I will try to put it back together again. The muscles are easy, but the vascular system, the bones, the see-through bits, those are almost impossible. I am lucky, unlucky, I am lucky again, sung to the tune of Dem Bones, Dem Bones, Dem Dry Bones. (Now hear the word of the Lord.)For C.Z.xo,S

5 comments:

Anonymous
said...

Wow...my condolences go to that woman's family. Life really is a precious thing if you think about it. All you have to do is step outside, take a wrong turn, and boom. (I always try to think about that whenever I just can't get the fucking cereal box open!!!) (rage-faced breakfast-ordering emotiji)

I'm very sorry to hear the news of C.Z. I mourn her loss not only for her family, but for you, too. Obviously, I have no idea of what either of you endured. I read all of your posts with heartfelt concern and anxiety, but I couldn't possibly understand.

With C.Z., though, you understood.

When I was 17, I joined the military. Just a few months after turning 18, we were deployed to the Middle East. During that time, I forged relationships that last to this very day. Regrettably, I don't talk to them much and I see them even less. But, if one of them called me for help, I would be there. We share an experience that few others would understand.

And, so it was for you and C.Z. You may not have known her well or at all. But, that doesn't matter. You are all bound to each other by something larger.

Thank you both. And Mr. X you are so spot on. I only knew CZ through the HSCT boards, through her questions and comments and back story, but it may as well have been me. She was my HSCT sister, for sure.

Hi, I'm Susannah and I love shiny things, swimming, the smell of fresh cut grass, orange blossoms and horse shit. The feel of my children's eyelashes on my cheek is a live virus that grows in me, multiplies and sustains. I will never understand Amish Friendship Bread.

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